Anyone (male) having needling pain at the tip of penis whenever there is a bladder spasm? If yes, any effective treatment that helps??? PLEASE RESPOND. THANKS
Sounds a bit devastating to go through all this, and not have success. I am going to have Intrastim, and my Urologist suggested I also get a pessary. If Interstim doesn't make that much of a difference I can also have bladder botox as well. Hopefully, between the three I should get some relief. Such a frustrating problem to deal with, especially the humiliation of having 'accidents,' and being stressed when out in public, not to mention all the additonal laundry every day! Thank you for sharing your experience, it is helpful to know what to expect.
I have this issue too..but I’m 68… I was told bladder issues come with MS…you need to see a specialist..check it out…I’ve been told I have MS I have many of the issues..
You mentioned that it worked for a while, then it stopped working. My doctor told me that, sometimes the wires move, and that would manifest as the implant not working.
Hi Christine. I have bladder control problems of my own- though different from IC. I'm in support of alternative medicine. Have u heard about Dr. Herman who treats people with IC? Maybe worth a try. Otherwise, try DMSO herb. RU-vid search "yummy mummy DMSO." The youtuber tells you all about DMSO.
Sometimes in life we have to give things a chance if we want to feel better. I had open heart surgery 11 years ago and I can take just about any pain after dealing with that. Try it and see what happens. What doenst work for someone else might work for you. I can be reached at stallion24@outlook.com
Thank you for your story. I am thinking of getting the interstim, but first am going to try botox. I totally related to your story about how hard it is to hard with IC. I have just filed for social security benefits after being off work for 1 year and in terrible pain. I had IC for over 10 years. Good luck in your journey.
Just had my trial yesterday and the numbing hurts like hell... Even After numbing my left side as he was entering hurted like crap which is the side we ended up doing for first two days . Day two now after it being placed wires trials. Little discomfort after raising numbers up . I went from a 2.9 to a 6.1 which was needed . Was going still every hour after on a 2 .. now seem sleep all night no wake up or sudden urges on this setting. But when on this setting you feel throbbing which goes away began fell like your heart beat you don't know it's thumping. Really helping. But in office trial I cried it hurted numbing and that left side. A lady before me came out told me it was going to be alright ..shhhh b.s it was but still .. but in end it's worth what I was going through if it as serious as you claim. Suck it up go for it. We have had worse member an epidural well there you go ,
Well, my trial did not go well at all. The leads migrated and instead of having it in for 2 days, I went back in and had the doctor tape the leads down again. No success. It was the holiday weekend and I was told to take the leads out myself. First of all, I have arthritis in my Sacral Iliac joints, so those needles hurt like h@ll and still do 3 days later. My trial was such a mess that I will never try the Interstim again. More power to the people it helps but it did nothing but cause pain for me and my legs still feel like electricity is running through them. 😢
I have went through a interstim trial for 7 days for fecal incontinent and I didn't use the bathroom for 6 days as well I found it was shocking me down my leg, feet, and groin. I decide to get it token out but once I got it token out that when I found out if you had this problem for awhile it may not work and they may have put it in the wrong place. My dr wanted to go in correct it or give it 7 more days and I told them No.
So far it seems to work for me. I am going to be patient because i have no alternative to a better quality of life. I was so miserable, Didnt want to go anywhere. without carrying loads of toitetries and cloths and clothes. I am good
I'm sorry what you are going through honey ! stay strong and hopeful ! I also find myself mad and frustraded at my own body for doing this to me.. I'm 19 years old with an over reactive bladder .. used to go to the restroom every 15 minutes and now 40 minutes with prescription from my urologist ... Yet, my quality of life has definitely decreased since this happen to me. I had to stop going to college, don't feel comfortable around public areas, always looking for the nearest restroom, always aware where the restrooms are. Life is complicated but I can tell you are a strong woman who has accepted this and fights everyday for a better tommorow. Wish you the best and pray that someday you can find something that helps you out ! look into Dr. Anthony Atala regenerative medicine.. much love. Thanks for sharing your experience!
arizbeth flores im 39 years old and i just start the trial period. im sorry to listen u go bathroom every 40 minutes. i going every 1:30_2:00 and is a sacrifice. my quality of life is terrible i had to do something. did you tryed botox? i think in your case medication isnt work good. ask your doctor for botox or neuroestimulation. ah And in my case i havê a neurological disease Call syringomyelia Thats probably is the cause Of my Bladder disfunction. sometimes is Good the urologist check the cause Of it. Be Strong! God bless you
Denise Aparecida Silva Louis Thanks Honey ! ❤ Although this affected my life very much I have accepted my body and I am trying to enjoy life even with my condition ! and yes, 4 weeks ago I started my neuromodulation with my urologist and now i can last up to 1 hour and 20 minutes ! I have improved alot in over a year and I did talk to my urologist about botox because I was aware of it and he responded by saying botox would be my last option if nothing else happens to work out for me !
Since the lidocaine doesn't help you. have you tried valium suppositories? All the meds i have tried gave me retention. i hear you about trying anything, that's where i'm at.
I'm sorry to hear it hasn't worked for you so far. I am in the trial phase day 2 (and i agree it is painful... i'm skinny too and it hurt when they went into the nerve didnt give me enough lidocaine) and so far not sure that i notice much difference. I'm also using it for IC which i have had for over 20 years with no relief other than from mmj but like you i can't work because of IC and am hoping the interstim will enable me to go back to work. I hope you find some relief, and thanks for sharing your story.
I have had IC for nearly 30 years. I've had every treatment that they do and now after my son who is a PA found me a good Urologist, I am considering getting an InterStem. The Mayo Clinic wanted to do it when they were in trials but I was so tired at that point of being used as an experiment. So I urinate on a good day every hour to 45 minutes. I have learned to live with it except when I have terrible flare ups. Then I want to die! I went from being an athlete to not even liking to get very far from my house because of this disease. It is complicated and I hate seeing a young lady like you having to deal with it. I never pray for me without praying for every person who is afflicted with IC. I hope the InterStem helps me. I can't tell you how blessed I would feel to be able to travel again without so much anxiety. I pray you! May you find something to help you:)
I am with you there. Thumbs down. I had to have mine removed, because it just stopped working. It went hay wire one day. I went back to the doctor and the leads had stopped working.
I wouldn't wish my IC on my worst enemy. I have battled it for twelve years now and am headed to a MRI because the doctor suspects MS which would be my worst nightmare. We do suffer terribly from this affliction it is not for the faint of heart once you have a positive DX you are in it for the long haul. This year alone we have spent 15,000 out of pocket and it's only July...Christina let me know the FB site you are a member of so I can join up. TC god bless, Lin
Dont be afraid to cry...even Jesus wept. But you should try elance.com if you can work from home. And can you apply for medicaid, link, or some other services like that? I know this is so hard on you (would be on anybody i'm sure) so Im praying for you all the time. Stay strong lady.
Glad your still holding ur head up! Thats often times the best medicine is to have a positive attitude even when its rough. Hit me up when u get a chance!
I regularly self catheterize myself daily everytime I have to pee ever since I was in a car accident in 2006. My bladder ruptured...10cm tear. Basically, I have 1/2 a bladder now...had IC and infections ever sicne. Have become resistant to 3 different antibiotices since I am always on them. I feel ya girl.
FELICIA GONZALES thanks for sharing hope your doing well I'm having bladder issues .myself was told I'll need a Foley catheter soon which has me very nervous I've never had one before not sure how they work or what to exspect
Rant on my friend! Thanks by the way! I'm laying here in extreme pain still in utter disbelief they didn't give me pain meds, not to mention I'm pretty sure I have an infection from this catheter! Can't wait til tomorrow to get this thing out because I can't take this pain anymore
Im watching you in tears. I have ic also and the emergency room jus gives u something for the moment and feel our pain isnt real. These doctors need to be more educated with this bc its pissing me off.I hope all is well with u. I was take a pill which numbs the bladder and causes me not to kno when I gotta pee bc I can't feel it. Smh :(. I was thinking about getting one of those bc using the bathroom is irritating so much. Sorry for the rant.
Pray for him. That's the best way to deal with ppl who mistreat you and dont seem to understand. Let God work it out. And im also praying for you. Do as much as you can when u can, but asking for help is not weakness it shows strength and ur determination to survive what ever life throws at u.
I'm going to continue to try the different programs. My setting is 1.5 at the moment. I just don't see this process becoming better so after a few more tries I may request removal.
I meant to ask what your setting is on. My rep told me she absolutely did not want me to feel it. She said it's totally different from the trial cos during it she wanted me to feel it. I'm proud of my scar too, and yes, mine still hurts and is sensitive as well!! I HATE THAT PART! Sensitivity with the incision sucks...
Do you still have the interstim? I have one for IC and I cannot stand it!!!!! I am getting it out in 2 weeks. I have had it a year and a half and never liked it. In the beginning I thought it might be better when it healed. It was the worst!!!!!! I would never recommend it. In so much pain now in my bladder and my back now.
I can't believe your trial only lasted three days. Yes, my stim started working before I left the hospital doors, but I realize that doesn't happen often and people need way more time with it. When are you getting it removed then if it's not working? Do you assume that it must be your muscle in the bladder than in the brain because that's how they explained it to me if it did no work? My stim has worked wonders! I still have a bad day every once in a while, but it was SOOOO worth getting for me!
Agreed & I hope I didn't offend you. I was just saying what I heard. I looked at your blog & did see that Melissa's questionnaire was almost exactly as similar to yours so I immediately thought she stole it. Now of course she denies it but like I said you & her know the truth. I don't want this to badly affect you or her, that's why I did the video. Wasn't trying to offend anyone.
